Simon van Eeden:

Well, I’m sure we’d be amenable to discussing the options.  How that would work, I’m not sure, but we can always talk about the possible options.  It’s always working on the details I think.

Yeah because I’m obviously a mother, and when I was doing coming up to [26:36].  It’s my biggest gripe because I know we need a nurse, but especially with the children growing up and especially in today’s society, a child psychologist is probably more important because being last for maybe the last two years, we need a child psychologist if we run into problems that could be counseling. We would have to pay for that as parents, and it’s not in today’s society that we can do that.

Simon van Eeden:

In your network, would you not be able to get referral to psychological services?

We’re tried that, but because it’s so busy and same with yourselves, you probably find it speech is one of the problems that has fallen on the priority list of funding.  There’s a child psychologist for everybody. It’s not just for clefting.

Simon van Eeden:

Do you want to add anything to that, Zoe?

Zoe Edwards:

I’m not sure how child psychology services are structured in Northern Ireland, but here, I would expect that there are CAMH services, Child, Adolescent, and Mental Health Services, in Northern Ireland in some shape or form.  As you said, there would be open to all the young people and families and therefore may have different criteria for referrals and the waiting list.

There may be specific expertise in pediatric psychology for looking at young people and families who have experience of ill health or chronic illness, but, again, you’re saying there isn’t the specific knowledge there around clefts and visible difference.  Potentially, what maybe you’re asking is if maybe someone can consult or liaise or share experiences. Obviously, that is a possibility, but in terms of getting the experience, knowledge, and link with the cleft team, I feel that my role here is working as part of a multidisciplinary team is very valuable because it allows good communication with the team and I think the best outcomes both physically and psychologically are when the team all work together.  That’s what may be lacking for the services in Northern Ireland at the moment.

In Northern Ireland, we had a child that we needed to refer to a psychologist, and we did approach the National Health Service and went through all the normal routes.  What we ended up with was having to pay privately for that child to get counseling. 

Now, I’m sorry. I think that’s wrong, and our funding is going to drop.  We’re not ring fenced so where do we get that money to send our children.  That’s why I’m asking, as cleft teams around the country and I know you often stick together, is there not something you can do to help with Northern Ireland or some of the others?  I know you are stretched as well, but if we discover a child who absolutely needs this, is there anything you can do for us if we need a child psychologist?

Zoe Edwards:

I really can’t answer the question.  I know that you know that, but the other thing to also think about is if you’re finding the statute services, I wouldn’t want to advocate that voluntary or private services are flicking the gap when the NHS should be providing what you need.  Also, think creatively about what else is out there so that the CLAPA changing services, charging for services, for example, may not be appropriate for that particular case. Obviously, I don’t know about that case.  Sometimes, those services are a weigh-in and may be able to facilitate identifying all the appropriate services.

Hello.  What causes cleft lip and palate?

Zoe Edwards:

Good question.  That’s not one for me.

Simon van Eeden:

In the vast majority of cases, we aren’t able to pinpoint an exact cause. We know that it’s probably a mixture of environmental factors and genetic factors.  Working together synergistically, we know that there are certain medications which are directly linked to clefting.  For example, the anti-epileptic medications.

We also know that certain environmental chemicals such as smoking, for example, can increase the risk of clefting.  Then, on the genetic side, we know certain genes have been identified where we know, for example, that you will get clefting occurring across generations, but in the vast majority of cases, there is no obvious direct cause.  That’s something, obviously, that has been looked at, and a lot of research has been done.

Closure of the facial processes which is what happens in utero is an extremely complex interaction of a number of different chemicals, genes, and tissues, and if that process is disrupted at any of those levels, then you have chance of clefting.

So, it’s extremely, extremely complex, and as I said, there is research going on at the moment that is trying to unravel that, but I don’t think we’ll ever fin a silver bullet really because you could have different factors affected and you’ll get a cleft regardless of which of those factors is affected.  You can have more than one affected at the same time.  So, it’s a very complex genetic question, and one that I think will take many years to answer.

Because people are saying that it comes from your parents and all that, the family background. 

Simon van Eeden:

Well, genetically, what you get from your parents is a blueprint for you, and you get a blueprint from your mom and a blueprint from your dad.  When they come together, it forms you.  So, you get a little bit of material from mom and a little bit of material from dad. Possibly, from that interaction together with things that might be happening outside, it might result in the formation of a cleft, but we don’t know which part of your mom or which part of your dad or which part of the factors from the outside might cause that cleft.

Right.

This is about the psychology.  Organizations like Samaritans use e-mail as part of their service.  They could be considered more cost-effective.

Zoe Edwards:

Telemedicine and using e-mail and telephone, the internet, and such has become, well, there’s research coming into that, and using that in psychology, I understand, is used in the Highlands in Scotland because of the distances covered in terms of face-to-face contact.  I know that Burns Services are currently looking into telemedicine, and that would include psychology.  It isn’t something that any of our services in the UK are using as far as I know, but it may be appropriate in the future.

Hello, I’m a parent of an adult with a cleft, and I wanted to go back to the point in the discussion earlier about who’s in the team and the approach to particularly psychology. I think it’s really important to remember that this isn’t just about and I think the point was made at the very end of that discussion, not just about NHS support and the multidisciplinary team but a kind of whole society approach.

I know that’s easy to say and hard to do, but I think that the CLAPA and Changing Faces and perhaps there are other organizations as well need to urge the government for more support to make this more of a general issue.  It’s easy to label the children as needing psychology or counseling, but some of them should be picked up as a preventative issue.

We know that children who have a cleft are going to look a bit different.  We know that society as it is, and it’s going to be tough for them in school and even as a parent of a baby, you come across that kind of funny reaction from people.  It’s not easy, and I think we need to do everything we can to make that a kind of a normal part of the support that services offer. 

So, between parents and also schools, working on schools and making sure that there’s support and tapping into the whole anti-bullying agenda because it should be a more normal thing and stop these children from getting as far as needing psychiatric support.  It shouldn’t get that far.  So, I would just urge for there to be a campaign around normalizing it.

Zoe Edwards:

As the psychologist on the team, I would agree that it is appropriate.  It is a bigger issue than we are looking after caring for individuals and families.  Our support often does go wider than that and just go into looking at places and its schools or wider when you people go to work.  Sometimes, issues go there, and we would go out and support those areas.  However, it is that the people who can really spread the word are CLAPA or bigger organizations like Changing Faces and the charitable organizations that do the bigger picture as it were.

One thing I would say is I hope the role of a psychologist is not the pathologize things that occur in terms of the emotional or psychological or social difficulties or challenges that sometimes children or families come across and face.  It isn’t about pathologizing that, and I hope that certainly work that way.  I hope all the psychologists in the UK would feel that it’s more about building on young people how to deal with issues as they arise.

I’m not waiting until it becomes a psychological, psychiatric illness or a mental health problem, but sometimes those issues do arise.  I do say we try to work early with families to think how they will manage as their child grows and develops as a family and how they will deal with, as you say, the difficulties and challenges that society throws at them.

This lady talked about normalizing the conditions.  I think that’s really an important point-of-view because from my opinion, I think cleft lip and palate is such a very common condition, if you like, and there is very little awareness on the national level about this condition. I think it’s probably easier for people to explain to other parents and for children to explain if there’s an existing level of awareness because if you have a starting point to start discussing the condition and talk about it, it does become more normal as you say.

I was interested if the team, if you know when you have parents coming to you for the first time with a diagnosis of cleft lip and palate, how many of those parents, do you know, are aware of the condition beforehand?

Heather McClements:

Nationally, I think, the pickup rate for the antenatal diagnosis of cleft lip is about 83%, and obviously, palates we can’t detect at all.  So, the parents who worry about their child’s speech from the palate point-of-view have had no support. One good role of your nurse specialist won’t just be feeding.  It will be lots of counseling and help from the antenatal diagnosis to hopefully prevent some of the later feelings of outsidedness and not being a part of our team because our team isn’t just us.

Our team is you and the child, and we want you to be part of our team, not “We’re the patient, they’re the team”.  We want you to be a part of our team.

Thank you.  What I actually wanted to know, though, was how many parents who come are aware of the condition beforehand?

Heather McClements:

Oh, sorry.  Not many.  I must admit.  When I speak to them or meet them antenatally or when they’re born, they say, “I’ve never come across anybody with a cleft before,” or they may have preconceived ideas of they know an adult with a cleft who maybe didn’t get quite the good repair that they do nowadays.  So, before, they’ve got a preconceived idea about how their child will look.

We do get a few that know somebody who got a cleft, but the majority of the patients have never come across clefts before and had no idea about them and never even thought that their child could have a cleft.